Welcome Friends!
Phoebe L.
Texas
Birth Date - June 3, 2008
Main Diagnosis - Food Protein-Induced Enterocolitis Syndrome
THEME: Disney Characters (fabric will be pink....she loves lots of pink)
Disney Movies Phoebe likes....
Tinkerbell, Lady and the Tramp, Bambi, 101 Dalmatians, Dumbo
Pinocchio, Monsters Inc., Cinderella, Alice in Wonderland, Little Mermaid
Beauty and the Beast, Snow White, Winnie the Pooh, Tangled
Brave, Minnie Mouse, Aristocats
Biography
Phoebe was born in June of 2008. Phoebe is our sixth child and our caboose. For the first six months of life Phoebe was a happy and healthy breastfed baby. At six months of age is when everything changed. When we introduced Phoebe to the normal first foods I soon realized that there was a problem. Phoebe dealt with significant reflux, diarrhea that often left her with a bloody bottom, horrible congestion and runny nose, asthma, vomiting, screaming when fed, fitful sleep, and FTT. Between 6 and 9 months of age Phoebe did not grow. As a mom I felt helpless and sad. Phoebe was referred to GI. Our allergist decided to start Phoebe on an Elemental formula and had us take all food out of her diet. We had only started giving her the basics such as rice cereal and a few fruits and veggies. Phoebe struggled to drink the required amount of formula to grow and thrive. She continued to deal with severe reflux which in turn exacerbated her asthma. I was a very tired mama. Before moving to a feeding tube Phoebe's allergist wanted to trial food one more time. We gave Phoebe boiled white meat chicken and she soon reacted and had horrible diarrhea and vomiting which landed her in the ER very sick. Finally after poor growth the decision was made to try an ng tube. What a journey. We started with an ng tube on December 28, 2009. Phoebe was 18 months old. It was a very scary decision and I cried my eyes out but once we all got used to the tubie we realized it was one of the best decisions made. With the ng tube Phoebe gained weight but the ng tube experience was very difficult. After weeks of the many frustrations that ng tubes bring (raw face, accidental pulling out, nasal and throat irritation, ect.), surgery was scheduled to place a g tube. On February 12, 2010, as I kissed my princess goodbye, I cried wondering if the doctors and my husband and I were really making the right decision to place a g tube. Of course it was the right and best decision. I will admit that I cried the first time I saw the Mic-Key sticking out of my precious baby in post op. It was a scary new world. After continuing to deal with repeat asthma flares and severe GERD God sent us a wonderful GI doctor who changed our lives. On April 13, 2011 Phoebe was switched to a g-j tube so that she could be fed directly into her intestines instead of her stomach. We also finally got a diagnosis, FPIES. Phoebe was diagnosed with slow emptying of the stomach and poor motility. During the transition from a g tube to a g-j tube Phoebe had a bad reaction to contrast dye and ended up in the hospital for almost two weeks. Life settled in and Phoebe thrived on j feeds and grew though it was at a snails pace. Phoebe had many reactions to contamination. Another food trial of potato in 2012 landed her in the hospital with severe low blood pressure, lethargy, diarrhea, crying and stomach pain. Phoebe has reacted to gum, flavorings in medications, and everything that has been trialed up to now.
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Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
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"THANK YOU"
Phoebe just got out of the hospital after a very severe reaction. I am so very thankful for mommy's intuition, because if I would not have acted when I did Phoebe may not be here today. When we got home from the hospital Phoebe's box was waiting for her. She was full of smiles when she saw her special quilt. I cannot even begin to tell you how very special what you all do for children like Phoebe.
Thank you, Jennifer
